Alzheimer’s Clinical Trials: Is Ignorance Really Bliss?

One of the biggest hurdles in the fight against Alzheimer’s and related dementias is finding willing participants for clinical trials. These studies are critical to developing viable treatments, but they obviously require dedicated subjects in order to move forward. It’s something I definitely think about – would I be willing to participate in a study now or if diagnosed in the future?Alzheimer's Clinical Trials

Knowing what I know today, I can say with 99% certainty that if I had a positive diagnosis I would sign up for a trial immediately. Participating without a diagnosis, however, is still a big question mark in my mind.

Alzheimer’s Prevention Registry

The Alzheimer’s Prevention Initiative’s Registry is just one of many sources for information regarding current research opportunities. The system matches members with studies they may qualify for based on responses to a brief profile questionnaire.

Some of the opportunities are as simple as participating in a survey, which I recently did. Questions included:

  • Would you want to have a biomarker test (i.e. PET scan or spinal tap) to determine if you might have Alzheimer’s disease years before you develop any symptoms even if there was no known effective treatment at that stage?  80% of respondents answered yes.
  • If you had genetic testing as part of a research study in which disclosure of results was optional, would you want to know the results?  89% said yes.
  • If you had the opportunity to undergo genetic testing for Alzheimer’s disease that was NOT covered by your insurance (out of pocket cost to you of at least $100), would you want it?  58% said yes, they would cover the out of pocket cost.

The Demographics Don’t Lie

My response, as well as the overall results, surprised me. Historically, I’ve been of the opinion that if no cure exists, I’d rather not know. However, with a nagging fear constantly in the forefront of my mind, my thoughts on the subject have shifted considerably.

I suspect the change is directly related to the helplessness I felt as I watched my mom’s unimaginable suffering during the last six months of her life.  The nearly nine years she was ill were horrible, but those last months were unspeakable. It is an experience that shakes you to your core, and neither life nor your outlook on it, are ever the same.

The Registry’s membership demographics tell me that I’m certainly not unique; 97% of the members have not been diagnosed, 79% are female, and 70% have a known family history. It appears as though my change of heart puts me in lockstep with the majority of my demographic.

Clinical Trial Resources

If you think you or someone you know might be interested in learning more about clinical trials, I urge you to visit the Alzheimer’s Prevention Registry or any of the resources listed below.  It’s important to keep in mind that there are many types of trials, and while some do involve experimental drugs, others examine things like education programs and alternative treatments such as diet and exercise.

The National Plan to Address Alzheimer’s calls for effective treatment or prevention of the disease by the year 2025.  Although it will take monumental effort, I truly believe this is an achievable goal. Alzheimer’s and dementia are finally moving into the mainstream spotlight. We can’t let up. Whether through participation in clinical trials, advocating with lawmakers, fundraising, or just keeping the conversations going, we can all do something to help advance the movement to end Alzheimer’s.

We would love to hear your opinions on clinical trials – is it something you’ve thought about? Would you consider joining a trial?

Please leave your thoughts and comments

  • Vicky Dodge

    I would love to participate in a trial! My doctor said I am in the early stages of the disease but I haven’t had any testing done.

    • Vicky, I hope the resources mentioned here will be of help to you. Please keep us posted. Wishing you all the best. ~Ann

  • Jaen Holkestad

    My husband is diagnosed with early onset Alzheimers and I am close in age to him with some
    memory issues. We would be interested in helping in any way we can.

    • Thanks for writing, Jaen. I would definitely encourage you to investigate some of the resources mentioned in the article. It is only through research that we will ultimately beat this thing. I wish you and your husband all the very best in your journey. ~Ann

  • carol

    My husband was diagnosed 2-1/2 years ago after spending two years of talk to get him to agree to go for the testing. Following the early-mid Alzheimer’s test results, we entered a clinical trial with the hope and prayer that the medication that is being tested will have positive results. We are in the second 18 month series of the trial. The first 18 months of testing was a blind testing so we don’t know if my husband received the new medication or not, this second round of 18 months he is receiving the medication. We cope very well most days. At first I was so sad that my life’s partner was changing and that there was nothing I could do about it to make it better that I struggled against this enemy that was taking my husband away a little at a time. Fear was evident in both of us. A Support group and the trial support have helped me realize that each day is the best day and to make the most of it. My husband struggles to find the right words to express himself and simple tasks are more difficult than previous. Our lives have truly turned upside down but we continue to cherish each day that we have and look forward to many more years and will make the necessary adjustment to our life as needed. Every day is not as upbeat as this sounds but mostly it is. We are in our 70s, have had a wonderful life and continue to enjoy little things each day. When days are difficult, we pause and rest to start over again later. The clinical testing provides us with hope that the medication will delay the loss of all memory. I would encourage anyone who has the opportunity to join a clinical trial to do so.

    • Thanks for the feedback, Carol, and I wish you and your husband all the very best. I absolutely agree that this disease teaches you to appreciate every day – and to treasure the little things. Right up until the end, I was still having moments of joy with my mom. The good days, gradually decreased in frequency, but we never stopped having good moments together. You are in my prayers… ~Ann

  • Cherie Becker

    My Dad’s younger sister died of Alzheimer’s a few years ago. My Dad now lives with me and has been diagnosed with early stages of Alzheimer’s. He is 90 and physically very healthy. Is this a genetic disease? I just turned 60, should I be worried?

  • My Dad has LBD there is a history of dementia illness in his family. I am in Australia and I would be happy to be tested so I can prepare financially and emotionally for what may be ahead. “Spinal taps” perhaps not I am such a wimp LOL. We test for breast cancer and encourage double mastectomies for women who are extreme risk. We test for other forms of cancer and diabetes etc. Why not dementia? With testing and research and education a cure will follow . I would be happy to pay costs not covered by medical insurance. I firmly believe because we do not know enough about the disease and there has been so little pre dementia testing /investigation/research that we do not know enough to say that there is not a general genetic predisposition to dementia. My only concern is that in doing this is that medical insurance companies will then apply the results of this testing and exclude people from insurance as they have been seen to do with other diseases. This is such an emotive subject and usually causes intense debate. .

    • Linda – thanks for commenting. You and I are on the same page, right down to the spinal tap… 🙂 I’m pretty wimpy about that, too!

      On a more serious note, I agree – these studies (including those involving people who are asymptomatic) are so very critical. They are where our future lies…

  • Cindy

    The only trials in the US are for Alzheimer’s. If you have another dementia it’s a no go, they won’t let you participate. I understand it’s the most commonly diagnosed so some money is received for studies, however those of us with other types of dementia don’t have any options.

    • Cindy, thanks for commenting – I had no idea that was the case, but I hope it changes sooner than later! Blessings to you. ~Ann

  • Metacomet1

    In my area, there are several folks seeking subjects for various trials. None of them for any potential treatments for the cause or cure of Alzheimers. That particular area of research seems pretty much abandoned to the non-profits as all of the pharma houses are concentrating on the next Alzheimer symptom relief drug. After watching Forest Labs peddle Namenda for years at over $12 per dose, that is what is of interest to the drug companies. Investigated one double blind study that required that the highly recommended Namenda be discontinued for the course of the study. Since they were trying to find an alternative for it, it figures that if a subject were using it, it needed to be dropped. Was told that they didn’t know if it did anything anyway, so it was OK to stop dosing. And since there was a placebo component to this particular study, just drop those pills we told you to take and help us find another pill for symptom relief…and we don’t have a clue what Alzheimers is about, so none of that much matters anyway. Certainly not as much as the bottom line of the drug house looking for guinea pigs.

    I think it is important for people who have hopes as they enter studies of helping finding a cure that they may not be what the study sponsor is actually looking for.

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